Entire Transcript in Adobe Acrobat Format - National Reference ...

214
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
actually are some pertinent differences, and one being, I
think, that some of the people you are talking about as
potential subjects may have a remitting and relapsing
course -- I mean, there are moments of whatever you want to
call it, remission or treatment -- may be able to be quite
decisionally capable and actually have some sense of what
it was like to relapse.
But I am very skeptical about many people
filling these out. I mean, some will. I guess you want to
give that opportunity. But I guess my suggestion would be
that what you are really doing, I think, with the current
proposal is saying for all intents and purposes research
that does not provide benefit and is more than minimal risk
is probably not going to happen. It is going to -- you are
going to have to work very, very hard to find that small
group of individuals who are willing to fill out that
research advance directive and you probably will not. That
may be fine if that is what you want to do.
I have some other comments that have to do with
sort of our conceptual thinking behind why we -- why are we
so willing to say that a piece of paper which is really
just a signature and a notarization and may not express any
more understanding, commitment or having thought through a
decision, I think it really goes back to this notion of